Checklist for authors
After receiving NACC data through the data request process, use the resources below to prepare for publication and review.
- Be sure to include the NACC/NIA grant citation.
- You are required to submit your publication to NACC for review before releasing manuscripts, meeting abstracts, or any other research results.
- In order to comply with the NIH public access policy, all authors using NACC data must submit their work to PubMed Central (PMC).
ADC vs. ADRC
Beginning in summer 2019, the NIA Alzheimer's Disease Research Center (ADRC) program is referring to all centers as Alzheimer's Disease Research Centers (ADRCs).
The NACC database contains data from both Alzheimer's Disease Core Centers (ADCCs) and ADRCs. If referring to the NACC database, you may refer to the centers as ADCs, but if referring to the current NIA program, we recommend referring to the centers as ADRCs.
Citing the grant
In abstracts and posters, acknowledge the NACC grant number, and the ADRCs as the source of the data.
In presentations and the acknowledgments section of manuscripts, the following statement acknowledging the NACC grant and Center support is required:
The NACC database is funded by NIA/NIH Grant U24 AG072122. NACC data are contributed by the NIA-funded ADRCs: P30 AG062429 (PI James Brewer, MD, PhD), P30 AG066468 (PI Oscar Lopez, MD), P30 AG062421 (PI Bradley Hyman, MD, PhD), P30 AG066509 (PI Thomas Grabowski, MD), P30 AG066514 (PI Mary Sano, PhD), P30 AG066530 (PI Helena Chui, MD), P30 AG066507 (PI Marilyn Albert, PhD), P30 AG066444 (PI John Morris, MD), P30 AG066518 (PI Jeffrey Kaye, MD), P30 AG066512 (PI Thomas Wisniewski, MD), P30 AG066462 (PI Scott Small, MD), P30 AG072979 (PI David Wolk, MD), P30 AG072972 (PI Charles DeCarli, MD), P30 AG072976 (PI Andrew Saykin, PsyD), P30 AG072975 (PI David Bennett, MD), P30 AG072978 (PI Neil Kowall, MD), P30 AG072977 (PI Robert Vassar, PhD), P30 AG066519 (PI Frank LaFerla, PhD), P30 AG062677 (PI Ronald Petersen, MD, PhD), P30 AG079280 (PI Eric Reiman, MD), P30 AG062422 (PI Gil Rabinovici, MD), P30 AG066511 (PI Allan Levey, MD, PhD), P30 AG072946 (PI Linda Van Eldik, PhD), P30 AG062715 (PI Sanjay Asthana, MD, FRCP), P30 AG072973 (PI Russell Swerdlow, MD), P30 AG066506 (PI Todd Golde, MD, PhD), P30 AG066508 (PI Stephen Strittmatter, MD, PhD), P30 AG066515 (PI Victor Henderson, MD, MS), P30 AG072947 (PI Suzanne Craft, PhD), P30 AG072931 (PI Henry Paulson, MD, PhD), P30 AG066546 (PI Sudha Seshadri, MD), P20 AG068024 (PI Erik Roberson, MD, PhD), P20 AG068053 (PI Justin Miller, PhD), P20 AG068077 (PI Gary Rosenberg, MD), P20 AG068082 (PI Angela Jefferson, PhD), P30 AG072958 (PI Heather Whitson, MD), P30 AG072959 (PI James Leverenz, MD).
Please do not state that “This study was supported by U24 AG072122.” (This is acceptable ONLY if NACC supported your study directly by awarding you funds through a NACC New Investigator grant.)
If you used data from the Alzheimer’s Disease Genetic Consortium (ADGC), please acknowledge that grant as well (NIA/NIH Grant U01 AG032984).
Describing NACC data
- Please be sure to review the data-collection forms and documentation, especially the Coding Guidebooks and Data Element Dictionaries, for help in describing the NACC data in your manuscript. You may want to consult this list of references cited in the coding guidebooks for the UDS and the FTLD and LBD Modules. These are the sources for the operational definitions and diagnostic criteria used in data collection.
- The papers by Weintraub (2009), Weintraub (2018), Beekly (2004), Beekly (2007), Besser (2018, on the Neuropathology Data Set), Besser (2018, on Version 3 of the UDS), and Morris (2006) describe NACC data in detail and will also be helpful.
- NACC recommends that you include the phrase, “This analysis used data from X ADRCs,” consulting the NACCADC variable to determine how many ADRCs are represented in your data set. (The NACCADC number varies from one data set to another because the number of ADRCs has changed over time.)
- NACC recommends that you describe the specific span of time that is represented by your data. This can be accomplished by using the start date of the UDS (September 2005) and the data freeze on which your analysis was based (e.g., “… for UDS visits conducted between September 2005 and May 2012”). Please note that any given data freeze contains data from the previous month and before, such that the June freeze contains data from May and before). Please refer to the email documentation that you received with your data set or contact a NACC consultant to confirm the data freeze used for your data set. If your data set includes MDS subjects, please be aware that these data were abstracted from medical records starting in 1984.
- If your research includes the CDR, note that Washington University requires that your manuscript's initial reference to the CDR® use the following language and registered trademark symbol: "CDR® Dementia Staging Instrument. "If your journal does not allow symbols, please include the full name of the instrument in your initial reference.
- Addition"lly, if you are using the FTLD Module and/or the behavior, comportment, personality and language items collected on UDS Form B4, note that Washington University requires that your manuscript’s initial reference to the CDR® and NACC’s additional FTLD Module components use the following language and registered trademark symbol: "CDR® Dementia Staging Instrument plus NACC FTLD Behavior & Language Domains." After that initial use, "CDR® plus NACC FTLD" is acceptable. If your journal does not allow symbols, please include the full name of the instrument in your initial reference, and "CDR® plus NACC FTLD" in the remainder of the manuscript.
Using appropriate methods based on the nature of NACC data
- Please note that the NACC data are not appropriate for studying the incidence or prevalence of MCI/dementia at the population level (city, county, state, etc.) because of the varying sampling strategies at each Center.
- If conducting survival analysis using NACC data, beware of common violations of model assumptions. For example, if a subject has become too impaired to continue follow-up, the reason for censoring may be closely related to the outcome. Please contact a NACC consultant with any questions about time-to-event analyses.
- NACC data are not ideally suited to study risk factors for dementia because of varying methods of subject recruitment across Centers and because of largely incomplete exposure histories.
- NACC consultants are happy to speak further with researchers about appropriate methodology. Please contact us at email@example.com.
Ensuring proper submission to PubMed Central (PMC)
- In order to comply with the NIH Public Access Policy, all authors using NACC data must ensure the proper submission of their published work to PubMed Central (PMC).
- For more information on this process, please see Resources for Navigating PMC Submission.